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What Do These Results Mean?

Blueanj

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Blueanj Newbie
Blueanj
Posted

Hi,

I had a Celiac Disease Panel done over a month ago.

Here's what it said. I am not sure how to interpret it:

Celiac Disease Panel

Endomysial Antibody IgA Negative

t-Transglutaminase (tTG) IgA 4 Flag High

Negative 0-3

Weak Positive 4-10

Positive >10

It says endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

So, since then I have done my best with what I am learning to take all sources of gluten out of my diet. Before this, I had bloating and distention daily, loads and hours of gas, a heating sensation in my stomach/intestines, anxiety, fluid retention, lactose intolerance, and I have Hashimoto's thyroid, too.

Since removing it, I have noticed a big reduction in gas, bloating and distention and have begun to lose weight and have lost my voracious appetite from before. I don't have many food cravings either. I am also free of all milk derivatives.

Occasionally, I have gas, but it may be related to lack of water or pms. I even bought a new coffee machine whose company says all their products are gluten/gluten by product free.

Last Saturday, I ate corn chips at Rubios. They did not have gluten, but I later learned that they are made in shared friers with beer battered fish, etc. Monday morning, I had a burning sensation on the back of my legs, behind my knees and noticed a nasty, burning red rash. I have had dermatitis before, and noticed dermatitis spots on my legs and stomach. After a week, it all began to go away and now itches a little as it heals. I rarely have had a rash like this, and assumed it was a heat rash. If I had celiac all along, why did the rash only appear now, when I'm gluten-free?

My question is - what is the likelihood I have celiac vs. gluten sensitivity? I've had endoscopies/colonoscopies over the years, and celiac has never been discussed. I was told to stop dairy and gum, but that never helped the gas. Gluten removal has stopped the bloating mostly.

I don't want to eat wheat again b/c I hate how I feel on it. But I've heard that if you don't have celiac and you remove gluten, it's bad for you. Any ideas of what I should do? Before the bloodwork, I had removed some gluten but still binged on half a bag of pita chips daily, as I craved them. My waffles, yogurt and most other things were gluten free, as I had begun to suspect gluten.

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Skylark Collaborator
Skylark
Posted

Chances are it's celiac rather than gluten intolerance becasue you have a positive celiac blood test. Didn't your doctor order follow-up testing? You should have had at least DGP-IgG and IgA to confirm the positive TTG blood test and the usual standard of care is a biopsy. Now that you're off gluten these things can't be done.

It's NOT bad for you to remove gluten if it makes you feel ill. That's ridiculous. Whoever told you it's good to eat something that makes you sick doesn't have a lick of common sense.

IrishHeart Veteran
IrishHeart
Posted

I have to ask:

What doctor ordered the test and what were you told?

Who is doing your follow up care?

beachbirdie Contributor
beachbirdie
Posted

I don't know where you might have heard it is bad to avoid gluten if non-celiac! In reality, grains are a relatively recent addition (well, relatively recent compared to the timeline of history!) to the human diet. There is no harm in avoiding it, we do not have a nutritional "need" for it.

Have you been given any referrals for follow-up? You have a positive celiac test on one that is pretty specific. They should do a couple more.

If you don't need a diagnosis, and the diet makes you feel well, and you think you can stick to it and not cheat (yes, even a little infrequent "cheat" is damaging to a person with celiac) then you don't need for a doctor to tell you to start. You can do it on your own for free.

There is lots of support and information available here when you need it!

Blueanj Newbie
Blueanj
Posted
  • Author

Did I test positive even though it sad negative and weak positive? That part was confusing to me. It was an endocrinologist who tested me b/c I saw her for hashimoto's. I asked for the screen b/c I know that celiac, lactose intolerance and thyroid stuff is common together and I was so miserable. I'm still having some symptoms, but maybe it takes awhile to resolve? She is ordering a followup blood test after three months of me being gluten free. She is also checking my b12 and vitamin k and d.

IrishHeart Veteran
IrishHeart
Posted

But I've heard that if you don't have celiac and you remove gluten, it's bad for you.

That's Baloney!

Who told you this giant lie?? :)

Blueanj Newbie
Blueanj
Posted
  • Author

A friend whose son was diagnosed and then undiagnosed w celiac. Doesn't make sense but she keeps telling me to find out if I really have a gluten issue or if its something else. I don't want to eat gluten to find out. I have a healthy respect for what happens when I eat it. My nutritionist also said bc the test was a weak positive it could have been a one time allergic reaction. I'm just confused and want to know.

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Skylark Collaborator
Skylark
Posted

Did I test positive even though it sad negative and weak positive? That part was confusing to me. It was an endocrinologist who tested me b/c I saw her for hashimoto's. I asked for the screen b/c I know that celiac, lactose intolerance and thyroid stuff is common together and I was so miserable. I'm still having some symptoms, but maybe it takes awhile to resolve? She is ordering a followup blood test after three months of me being gluten free. She is also checking my b12 and vitamin k and d.

Your endocrinologist really screwed up. She should have told you to keep eating gluten and referred you to a GI. It's reasonably common to only be positive on one celiac test and still have celiac disease. The blood tests aren't very good so even one weak positive is cause for concern. Rarely Hashimoto's can cause TTG-IgA but it's usually caused by celiac disease. Now it's too late unless you're willing to go back on gluten for a couple months to get the rest of the testing you need.

Yes, celiac takes a longer time to resolve than gluten intolerance.

Blueanj Newbie
Blueanj
Posted
  • Author

Do u recommend seeing a GI instead?

psawyer Proficient
psawyer
Posted

That's Baloney!

Who told you this giant lie?? :)

There is nothing unhealthy or harmful about not eating gluten, or any other grain for that matter. The nutrients in grain are available from many other sources.

IrishHeart Veteran
IrishHeart
Posted

There is nothing unhealthy or harmful about not eating gluten, or any other grain for that matter. The nutrients in grain are available from many other sources.

My childhood friend, diagnosed with MS for 25 years, has kept her MS at bay, even running the Boston Marathon years ago by taking gluten (and in fact, all grains) out of her diet.

She is healthier and more energetic than most people I know. :)

She is an inspiration.

Skylark Collaborator
Skylark
Posted

Do u recommend seeing a GI instead?

Depends on whether you want to pursue a celiac diagnosis, or if you're comfortable just eating a celiac-safe diet for the rest of your life. If you want to pursue diagnosis you need a GI. It's your choice, really - gluten makes me so sick I opted for the lifelong diet rather than challenge for more testing. Problem is with the positive TTG you can't safely assume you're not celiac.

Takala Enthusiast
Takala
Posted

If you have another outbreak of "Mystery Rash," which has a good likelihood of being DH, you can have the skin right next to the outbreak blisters biopsied. A positive biopsy from that is considered a celiac diagnosis if the doctor isn't an idiot.

beachbirdie Contributor
beachbirdie
Posted

A friend whose son was diagnosed and then undiagnosed w celiac. Doesn't make sense but she keeps telling me to find out if I really have a gluten issue or if its something else. I don't want to eat gluten to find out. I have a healthy respect for what happens when I eat it. My nutritionist also said bc the test was a weak positive it could have been a one time allergic reaction. I'm just confused and want to know.

Sorry to say this, but your endocrinologist and your nutritionist are equally dumb.

A weak positive celiac test does not indicate allergy. An allergy is mediated by a different set of immune globulins, IgE.

Basically, with this disease and many others, doctors don't know what to do with it in the early stages, before the catastrophic damage has occurred. Your weak positive could be at the lower end (and I'm just speculating) just because you have NOT yet sustained the heavy-duty damage. I'm not a medical professional, just sharing from the collective wealth I've been given by many who are wiser than I. Far better to take care of it early rather than after your body has been wracked by the nutritional deficiencies and pain that come later.

I wish someone had told me 12 years ago that Hashimoto's and celiac were related. I might have been able to salvage some of my natural thyroid function. I'd gladly have given up my pizza, pasta, and sourdough in order to save my thyroid.

IrishHeart Veteran
IrishHeart
Posted

My nutritionist also said bc the test was a weak positive it could have been a one time allergic reaction.

whaa??? :blink:

Your nutrionist does not know what she is talking about, hon.

Sorry.

I am sorry your endocrinologist didn't just make the call from these results, if having a solid DX will make you feel more at ease. And I do understand the confusion and frustration you are feeling, believe me!

Read the responses these people with real experiences and wisdom have written and make your own decision.

But from all you are telling us, I think you already know what you need to do.

If someone feels "bad" on gluten, they have some type of gluten sensitivity/intolerance. It is not an "allergic" response.

The question is "How bad do you want to pursue a set-in-stone DX?", because you are going to have to chow down on some serious gluteny foods to do the testing they require for those two words to appear on your medical records.

Unless of course, the Endo is willing to say it IS celiac disease. Why not just ASK!?

The treatment is still going to be the same: a STRICT gluten-free diet.

Blueanj Newbie
Blueanj
Posted
  • Author

I'm also becoming suspicious of corn. Does anyone know of an excellent food allergy specialist in Phoenix?

If you have another outbreak of "Mystery Rash," which has a good likelihood of being DH, you can have the skin right next to the outbreak blisters biopsied. A positive biopsy from that is considered a celiac diagnosis if the doctor isn't an idiot.

Do I see a dermatologist for the rash to be biopsied?

I'm thinking of removing corn too. Terrible pain today after eating corn.

IrishHeart Veteran
IrishHeart
Posted

Allergies do not give you stomach pain. They cause histamine responses.

You may wish to read about the differences between allergies and intolerances and CELIAC . Contrary to what people say, Celiac is not a "gluten allergy".

I am not sure what you think you will gain from allergy testing.

Corn is difficult for many people to digest, especially in a gut that is ravaged by celiac.

I always had stomach and abdominal pain after eating corn (my favorite veg) and now, I do NOT! :)

Take out any foods that give you grief. Let your gut heal and try the food again in a few weeks.

It takes time to recover from the damage done in celiac.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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